Two of the three children’s hospitals in Central Florida are seeking approval from the state to start pediatric liver transplant programs, once again fueling the debate about the number of specialized programs versus the quality of such services.

Nemours Children’s Hospital and Florida Hospital filed separate Certificate of Need applications with the state this month to perform the transplants.

The procedure is currently performed only at Jackson Memorial Hospital in Miami, and that’s not enough, according to Florida Hospital.

“There’s an immense need for children, not just in Central Florida but across our state,” said Florida Hospital spokeswoman Claudia Arbona in a statement to the Orlando Sentinel. “As it stands today, the only active such program in Florida is in Miami, causing dozens of children and their families to travel great distances for treatment.”

Nemours officials said in a statement that they continue to assess the area’s need and will provide more details later.

Meanwhile, Ed Jiminez, CEO of UF Health Shands — which already has state approval to perform the procedure — is concerned that having new programs in the state will dilute the patient volume in Miami and lead to a drop in quality of care in the state.

“We truly believe for transplants, the more you do, the better you are,” said Jiminez in an interview.

UF Health Shands in Gainesville used to offer the surgery but ended the program in 2015, concerned with low volume. In 2014, of the 21 pediatric liver transplant cases, six were performed at Shands.

The hospital, instead, decided to partner with Jackson Memorial.

“There’s zero evidence of need,” said Jiminez.

“And I have zero evidence that distance matters,” he said. “For all kinds of transplants, when we talk to our families, distance doesn’t play a role. They want to go to the best center.”

Nationwide and in Florida, the liver is the second most common transplanted organ after kidneys. Most of the patients who receive an organ transplant are adults, a fact that holds true for liver transplants. While many adult candidates need a transplant because of fatty liver disease, complications of alcoholism or hepatitis C, children’s needs arise from birth defects or genetic and metabolic diseases, said Dr. Tamir Miloh, director of Pediatric Hepatology and Liver Transplant Medicine at Texas Children’s Hospital.

Last year in Florida, 27 pediatric liver transplants were performed, and in 2015, there were 45, all at Jackson Memorial, according to federal Organ Transplantation and Procurement Network data.

Officials at Jackson Health System didn’t provide an interview, but in a statement they said their center “has the capacity to serve the entire state, with its pediatric liver program reporting successful high patient survival rate.”

Miloh of Texas Children’s, who is not involved in this brewing fight, said there are advantages to centralizing a transplant program and advantages to providing it closer to the community.

The median wait time for a liver is five months. While waiting, patients have to stay close to a transplant center, “and it’s difficult for some families,” Miloh said.

On the other hand, “there’s evidence that centers that have more experience and larger volumes tend to be more aggressive with organs, meaning sicker patients will be transplanted earlier,” Miloh said.

Yet, it’s possible for smaller centers – which in the case of liver transplants is fewer than five cases per year – to have a successful program, he said.

To Miloh, however, the bigger issue is the organ donor pool, which always falls short.

As of May 18, 15 children were awaiting a liver transplant in Florida, according to the latest data provided by the Organ Transplantation and Procurement Network.

“Definitely, we need to bring awareness about organ donation,” he said.

The health systems have to complete their applications by the end of June, and the Agency for Health Care Administration will announce its decision in mid-August.

If one of the two programs is approved, the other can contest it and ask for a hearing.

Nemours, which continues to establish itself as the newest children’s hospital in Orlando, ruffled some feathers recently when it applied for a certificate of need for pediatric heart and lung transplant programs. That move too faced objections from local and state transplant providers.

In the end, the state denied Nemours’ application for a heart transplant program but green-lighted the lung program. That decision hasn’t been challenged by any other program, and the hospital has until next September to implement it.

Welcome to Transplant Families

Who are we. We are a group of transplant families just like you. Our kids have seen more in childhood than most of us will in a lifetime. They are gifted life through our real life super heroes, their donors. And us as families (dads, moms, sisters, brothers and so many more) get to be with
our transplant kids in this crazy new journey in life.
We are here to offer hope. Hope told through the stories of fellow families who have been there before us. We are hoping that in these stories, we can find strength, courage and resolve.
In addition to links to amazing stories of other transplant families, we are offering resource links to many different community resources all here to help us. It really does take a village. And between our family, extended family we call our transplant team and so many others out there willing to help, there is so much knowledge and so many great experiences to be had.
Hopefully you will find these helpful in your own journey.
Your first source of information should ALWAYS be your transplant team and mainly your transplant coordinator. They have a vast knowledge of all things related to transplant.
They are your child’s first advocate outside of yourself.